Nottinghamshire & Derbyshire IA

Newsletters June 2011 Topics include..... IA National Council 2011, Events Round Up, “Then Life Took Control”, Breakaway Charity Event, Be a Model to Others, Subscriptions & personal details updates. February 2011 Topics include..... See you at the AGM, Coming up in 2011, IA National Council 2011, IA Forum and personal details updates. November 2010 Topics include..... Donations to National IA, Event updates, AGM 2011, Christmas Party, City hospital drop in clinic - date change and personal details updates. August 2010 Topics include..... Young IA Derby event, Pouch night out, Christmas Event, ConvaTec visit, Salts Open Days, Mansfield open day, Leicester Stoma Support Day, Membership and personal details June 2010 Topics include... Events, Patient Open Day Mansfield, Breakaway, Renew your membership, are your details up to date? January 2010 Topics include.... Internal Pouch Day Information, Supporting individuals, The Kingston Trust, Renewing membership by cheque, 2010 AGM, Are your contact details up to date? September 2009 May 2009 March 2009 January 2009 Newsletters are in PDF format. Click on the Adobe icon to download the latest Adobe Reader

The FAP Gene Support Group

7th Family/Information Day Swarkestone Sailing Club South Derbyshire 31st March 2012 from 10am There will be a change of format this year, to one similar to that we have used at the September Chat Days for the last 4 years with good results. There will be fewer speakers, but plenty of chat, we have found we all have plenty to contribute. So should you feel like doing your own talk or presentation about your experience, please get in touch with John or Mick. Mick has asked Dr Julian Barwell of The Genetic Centre at The Leicester Royal Infirmary to speak during the morning; The Centre has just received funding from Macmillan for setting up groups for patients thinking about cancer prevention and survivorship strategies. Also, Muditha Samarasinghe from the St. Mark's Hospital FAP Registry will join us and she will run a session in the afternoon. She is not sure what the content will be just yet and will let us know later. Wendy Chorley, Derby Hospitals Family Cancer Nurse will also be supporting us. We already have 20 visitors registered and have facilities for a total of 50. We also welcome medical/genetic personnel with an interest in learning or sharing their knowledge about a rare condition. The cost will be £2.50 per adult with a maximum charge of £5 per address. Those under 18 are free of charge and this will include a hot buffet lunch and hot and cold drinks throughout the day. Secretary Mick Mason 12 Freeby Close Melton Mowbray Leicestershire LE13 1HN Tel: 01664-566101 E-Mail mickmason@fapgene.com Chairman John Roberts 21 Clinton Street Derby Derbyshire DE21 6DH Tel: 01332-361234 E-Mail johnroberts@fapgene.com Website - www.fapgene.com Application form The FAP Gene Support Group have asked if we can alert members to their forthcoming Family/Information Day. Please read the information below and contact John Roberts or Mick Mason if you require further information or complete the application form if you wish to attend.

National Council 2011 This year the National Council meeting was held at the Beaumont Estate Hotel in Windsor, a beautiful part of the Berks, Bucks & Oxon (BBO) IA area. The meeting, held over the weekend of 9th & 10th April, was well attended by member organisations, ostomy product suppliers and a number of honoured guests. The Nottinghamshire & Derbyshire IA was represented by Fiona, Rio & Pete. Following registration the meeting was opened by the president of the BBO IA, Mr Andrew Huang MB ChB who welcomed us all before handing over to Dr Terri Porrett, the Nurse Consultant of the North East London Bowel Cancer Screening Centre. Dr Porrett gave a very interesting Salts Healthcare Lecture on how care can be improved through collaboration and encouraged us all to make closer links with our local stoma care nurses. One interesting statistic from the lecture is that around 60% of stoma patients have skin problems, yet half of those people are unaware that it is even a 'problem'. Members are encouraged to seek advice from their SCN if they feel they may have a skin issue. A number of well attended workshops were held on both days which kept to the theme of the meeting which was “Support Through Sharing”. Delegates were encouraged to contribute to discussions in several key areas and share their ideas. We certainly came away with a number of ideas that we will be developing over the coming months in order to provide better support for our members. On Sunday the Brian Brooke Lecture on Ileostomy function & dysfunction by Dr Simon Travis DPhil FCRP, the Consultant Gastroenterologist at the John Radcliffe Hospital in Oxford, was interesting and enlightening. For example, adding 1 tablespoon of salt to a 500ml bottle of a sports isotonic drink makes for an excellent rehydration formula. Dr Travis also mentioned how people without a colon can take larger doses of loperamide than those with a colon and that he has one patient with a high output stoma on a dose of 50 tablets a day. Of course it is strongly recommended that members should only take medication as prescribed by their doctor and to seek medical advice before making any changes to medication. In summary, it was a very worthwhile meeting for your fledgling committee members and we hope to use the information, ideas and links we made to improve the support we give to our members.

Ordering Supplies Speaking to members it is clear that there are many different ways in which we get our supplies. Some go direct to their chosen supplier to order, who then request a prescription from the GP, others get their prescription from their GP and then post it to their suppliers. But, in these financially challenging times things are changing and more and more PCT’s are insisting that a prescription is obtained by the supplier before issuing any new supplies. Some GP’s are also asking members to attend regular reviews with a stoma care nurse to re-assess their needs and to review the products they use. This is a standard practice with medicines and not something for members to be afraid of. If you are asked to attend a review, we suggest you take samples of your supplies along to help explain how you use them. Often GP’s have never seen some of the items we regularly use and seeing them at first hand will improve their knowledge and ultimately their care for stoma patients. In Derbyshire, we have heard from members that suppliers are asking for a prescription before sending out supplies, which may mean it takes longer for your supplies to arrive. Again, this is nothing to be concerned about, provided that you allow extra time and don’t wait until the last minute to order supplies. We are not aware of any changes in Nottinghamshire at present but members are advised to check with their supplier if concerned. The key points from this are to ensure you order supplies early and not to wait until the last minute. And if invited for a review, take along samples of the products you use to help explain why you need them.